forget to remember

"Prescribe pills to offset the shakes to offset the pills you know you should- take it a day at a time...." -Panic! at the Disco

feeling: broken-hearted (screw men)
listening to: "Map of the Problematique" by Muse

I'll start this out with something good-

MY PERIPHERAL NEUROPATHY IS GONE!!

Yes, you read that right!! I really noticed it at Disneyland back at the beginning of May. That's when it was so obvious because that was a huge test of my abilities. I walked all over the place from park to hotel to restaurants and I simply OWNED that place. Nonstop walking. Yeah my joints hurt and all that but so did all the other "normal" people in the group. Disneyland can kill anyone but I....I made it. *tear* I haven't not been in a wheelchair or something like that at Disneyland in....well too long. It was so wonderful!


Now to the bad part and I want input on this if anyone else has experienced it: my memory has totally gone to hell. I'm taking Aricept for it which is supposed to work amazingly for Alzheimers. So far, no improvement and I've been taking it for months. It's bringing down my school work and everything and I'm usually an A student so it's been kinda depressing. I had a hybrid class this semester so part of it was in class and the other part was online. I missed three major tests in that class because my brain doesn't remind me to go to the website and do it. So frustrating! Anyway, blah I'll expand on that later.


I got a new tattoo on my left thigh and I don't think I've talked about it on here. Marty- I've been dying to show you this one:

Also, I got the back of my neck pierced but that came out after a month. I got bored with it. :( I still thought it was super cool though but it takes a lot more maitenence than a tattoo so I felt like it was a little more risky if I started slacking heh.

So yeah, all in all I am doing VERY well but still manage to have my ups and downs just like any person transplant or not. I'm actually beginning my autobiograpy (finally) about my experience with the transplant. It's really hard to figure out how I should write it though so I'm working on it. More updates soon (since school is almost out...yay!).

<3 Ashley

walk it off....

listening to: "The Swarm" by Dismantled
feeling: sleepy

School started a couple of weeks ago and I've been noticing that it's been easier to walk lately. My doctors took me off Voriconazole to see if that would help and maybe it is. Most transplant patients get off that medication pretty soon after surgery but I've been on it since then so they thought maybe it was contributing to my difficulty walking. That, mixed with my physical therapy have created a positive outcome so far. It's crazy how there are so many little symptoms that doctors are completely baffled about. That's why us transplant patients have to stick together and share what we've experienced. I've got so many random things going on and it helps to talk to others who might have heard it or had it.

I am the first for a lot of things. Doctors always say, "we've never seen that before" or "that's never happened" etc. That's part of the reason I got my tattoo was because for once I wanted to do something that I actually chose to do and not that was chosen for me by fate. I understood the risks and consequences and did it anyway with the knowledge I had from researching it. Now, I'm even planning on my next tattoo on February 20th. They couldn't stop me, weee!!

That's another thing I'll vent about shortly. I love my transplant team at UCSF. They understand that I got lungs and want to live. They are there behind me every step of the way making sure I can live life but yet they can still protect me from doing anything extremely stupid. Haha! St.Joe's transplant team however is a team I do not trust with my life. Not to scare any of my friends that belong to their team but I just feel like they don't know how to handle post-transplant situations and yet are too proud to ask other teams for ideas or input. I feel bad seeing all my friends getting sick under their care. It's a long story that I could spend pages and pages venting about but I won't. I just want to say that it makes me sad and I hope that all my friends will question what is right and wrong and keep an eye on how they feel so they can catch symptoms in advance.

Now that I've had my mini rant (you don't want to hear what I really want to say haha) I found this article that is a great thing for future transplant patients. It's about freezing organs for transport and it would have been nice to have more time to get to the hospital. I loved living in San Francisco but waiting was hard with out being near my friends and my pets and in my own bed. It would have been nice to have the choice of being there or being home. Although, it was convenient to be right by the hospital all the time....


http://http//thefutureofthings.com/news/6276/frozen-organs-live-longer.html?addComment


Anyway, I'll try and write more. I like having this as a venting place for my health issues because none of my other friends really understand or want to hear about it. (Or maybe I'm just assuming that.) So, I'll make a point to write when I have something to say. Wish me luck on keeping that goal! Haha.

love life

feeling: bored
listening to: "Decode" by Paramore

Every year I get an Ireland desk calendar so I can keep track of everything from concerts to doctors appointments, etc. I go through it before I throw it away at the end of the year it’s really interesting to read back on all that happened.
January 2008 was started out in Albuquerque, New Mexico as usual but this time instead of being at my dad’s house I was at Leigha’s. We were both super excited because we’d soon be on our way to Phoenix and she was going to live with me. Finally, together forever!

Our time together had its ups and downs and we parted ways in March. She went to live with two other roommates and I moved my room back to how it was before she’d gotten there. It was a very sad time for both of us I think because we both had such high hopes and to this day I will never take back anything I said or did. I told her I loved her and it was true. I have never loved somebody as much as I did Leigha but circumstances pulled us apart and even our friendship got complicated. To this day I don’t know how’ve we’ve gotten to the point we’re at now. It’s part, anger, sadness, bitterness, relief, hope. There are many emotions that I’m feeling and I can only imagine what she feels as well. She decided it was in her best interest to move back to Albuquerque and in doing this, it put the distance between us a reality. We still talk and I’m glad about that but there are days where I miss how close we used to be. Inseparable. It’s ok though, I’m living my life and she’s living hers. As long as we’re happy in that…..


I went to a lot of concerts in 2008 starting with Ill Nino on February 8th. I finally got to meet Cristian Machado and that pretty much completed my life right there.

The 17th, Leigha and I drove to Tucson to see Aiden and we even got to see a private performance at Zia Records before because we’re awesome like that.

July 16th was the Kill Hannah concert and after waiting hours in the blistering heat, it was SO not worth it. I still like their music and I liked the energy but Mat Devine is a douche bag. End of story. The White Tie Affair stole the show if you ask me.

July 18th was the Disturbed/Slipknot concert with my friends Eric and Jenn and no other concert will be able to compare I think. Slipknot is the most amazing band EVER live. It made me appreciate all the talent that is put into what they do. Most people just think, “Yeah, they scream. Big deal. That’s not music!” BULLSHIT. Every band member plays their instrument whether it be drums, guitar, vocals, turntable, whatever and each does it with an intense amount of passion that is only proven even more in concert.




Projekt Revolution 2008 occurred on my birthday this year. August 7th. Woot woot! It definitely didn’t compare to last year though and I was spoiled by Slipknot still.


Shallowpoint performed on September 6th and then with the Iris on Halloween. It was fun to get all dressed up with my lovely twin soul, Miss Twilight Starr. We definitely rock it when we get together, I love you girl!

I was SUPPOSED to see the Backstreet Boys on November 21st but Nick just had to get sick and disappoint me. I was sooooo sad about that! I’m still pissed actually. So that was my year in concerts as far as I remember.

I’ve been very involved in helping with Donate Life of Arizona as well as the St. Joe’s Lung Transplant Support Organization of which I am a board member. I’m also pretty much the main computer expert in the group since I’m the youngest and therefore the least frazzled about technology. Haha! I did a couple booth things with Donate Life, one at Laura’s Run in Scottsdale and got a lot of people there to sign up to be donors. Also, I had a booth set up at MCC and met some cool people there as well. I really enjoy doing that and talking to people about donating. I did a couple speeches regarding that too, one in public speaking and the other in sign language. Hopefully I got some people’s attention. I’ve met a lot of cool people being involved with those groups and have done activities with them on the side as well. I went with them to the Renaissance Festival and it was actually my first time.

I also did I few games with all of them in the name of Donate Life such as the Coyotes and the Diamondbacks. I became the closest with Michele and her and I would hang out all the time and go swimming and have lunch and just cause trouble in general. We did a lot of dinners together as a whole group and celebrated a lot of anniversaries as most of them are celebrating being a year out from their lung transplants.


On the 27th of July we all decided to go to Disneyland just for shits and giggles and had a great time. I’m definitely VERY happy that they have become such an important part of my life.



School was pretty good Spring 2008 and I met a lot of awesome friends that I continue to be friends with to this day. I was in a speech competition (thanks a lot Jessica haha) and finished off the semester with good grades.


Fall 2008 was definitely the most difficult semester of my school career but I got through it with nothing less than a B which is amazing considering I was prepared for an F in a couple classes. I had to work especially hard in my Career/Work Experience class where I had to follow around interpreters in various environments for at least 45 hours. That took up most of my time needless to say, not just the hours themselves but finding them in the first place. It was an awesome experience though and I learned a lot. It’s finally over but here I am ready to start Spring 2009. Blah!

I did a little bit of traveling this year:
· Went to Sedona in January so I could show Leigha what it’s like up there for her birthday.
· Drove to Tucson for the Aiden concert on February 17th.
· San Diego on April 25th to see Bryant and Shari’s new condo and it was a really pleasant vacation.

· Went to Carmel, California for Mothers Day in which I paid for the whole trip. We stayed at the Tickle Pink Inn which overlooked the ocean and we rented a car and drove around to all the places where we used to live. My mom said it was the best present ever.

· San Francisco on June 11th for the check-up
· Disneyland July 27th
· Seattle August 3rd for my birthday. (My first time!)

· Sedona for Thanksgiving as usual
· Albuquerque December 31st-January 4th to see my daddy and my little sister


Random Stuff

· May 17th- My cousin Melissa had a baby
· June 20th- Meredith’s wedding!

· August 13th- Got my tubes tied. No little Ashley’s running around!
· Interviewed for jobs such as Starbucks, Fascinations, and Tungland Corporation.
· December 2nd- Got my tattoo for Sarah (and did fine so I’m getting more!)

· Lots of ASU games

· Saw Twilight 6 times and counting….

· Christmas parties!!

I made a lot of great friends this year with people I either just met or knew before and became close with. People such as:
· Jessica
· Jason
· JT
· Mark
· Michele and Glenn
· Mason
· Carl and Elaine
· Anne
· Tiffany
· Rafaele
· Craig
· Heather
· Stacy
· Mel
· Ashley
· Tuesday
· Billie
· Cheryk
My best friend this year has been Terra. We’ve gotten so close lately and I’m so glad because we’re almost inseparable now. Terra, we’ve been through so much together and through all our crazy-ness and drama, we’re still friends and I’m so happy for that. I can’t wait until we move to London! ;) I don’t know what words to say that can express how much I love you but I’ve got many more years to at least try to show you how much you mean to me. Hugs and kisses my lover!
I also lost a few friendships this year and honestly it has been for the better except for people like my Blaine who I miss very much. (I love you!) But I haven’t lost him, he’s just far away.

Someone I have lost though is Kristi. You read my blog a couple blogs ago and know of my loss. It’s hard for me to talk about still and I’m working on being strong in her memory. She died July 18th and this year, I will honor her memory by getting a tattoo for her on my side (by all my scars) that says “indestructible.”
It’s been a crazy year and I can’t even write about it all. Not that you guys wanna hear it all anyway. This entry is long enough as it is! 2008 was a good time and 2009 is starting out to be awesome so far. I can’t wait to see what happens!

the breakdown

feeling: broken-hearted
listening to: "Beautiful Loser" by William Control

Where so I start? I've been so all over the place lately. I've been angry, ecstatic, depressed, nervous, busy, confused, silly, creative, blissful. Everything. I haven't written in forever for a few reasons mostly because I feel like no one reads this anyway. Secondly, I don't like complaining and I feel like a lot of this boils down to that because most of the time to be honest, I'm just not happy. An awesome psychologist came to speak at the St.Joe's support group meeting this week and he explained it well. Pre-transplant you're really depressed and then there's this magical period after that where you're cool and then you go downhill again. I'm at that point where I'm on the downhill. I understand how amazing it is that I'm alive but at the same time I'm caught up in how hard it is to get from day today. Anyway, here's everything that's been going on in a nutshell:

Love:
This is one aspect that a lot of my current transplant friends don't have to deal with. Most of them are older and are married and here I am still waiting for my prince charming to come riding up on his stupid white horse. I honestly feel like I will never find someone that can put up with me and all my "drama." Most people my age can't handle being with me and everything I've been through. It's too much. Everyone else seems to have someone that's been with them through it all. I was alone. Well, except for my mom but I'm not exactly planning on marrying her. Hahaha. It's just hard being in my situation and having to act like a "normal" girl. I feel like I'm every guy's best friend but no one's true love. Well, maybe I am but there are other circumstances involved and here I remain by myself yet again. It's just kinda frustrating and a little depressing. I won't get into anymore detail than that because it's complicated and also something I don't want to share with people that may read this as it might be inappropriate but let's just say love as far as it goes with me is a dead end.

My health:
This is a big reason as to why I haven't written. I've been doing some testing in regards to my peripheral neuropathy and it's been hell. I finally reached that breaking point where I just can't take it anymore. I had to get the test again with the electric shock and the needles but this time it was worse. It was with a different doctor this time who was nicer but the test was more intense. After an excruciating series of shocks and needle sticks into my muscles, etc. I laid there on the cold doctor table with my head on that stupid little flat pillow and just started crying. I NEVER cry for any procedure I do but this was it. I finally broke. I'm tired of just laying there and letting them do things to me. I lie there and take it with a fake smile on my face and try to laugh a little to lighten the situation when inside I'm screaming. This time, I couldn't hold it in anymore. How much more of this can I take? How many more times can I be poked and prodded while everyone takes it for granted?

Well, it gets better. After that, I was told I need a muscle and a nerve biopsy as well as a spinal tap. I just wanted to run out of that office crying. What the fuck else can you people do to me? I was so upset and I knew that if I blogged about it you guys would end up seeing a LOT of cuss words and I'm trying to keep this at least a little innocent Heh. Anyway, I'm scheduled for those super fun tests sometime soon so I'll let you know if I survive haha.

I am making progress with my physical therapy though. I feel like I'm getting stronger and am able to have more endurance and walk more which is great when it comes to getting around campus and just trying to be a normal kid. I'm so happy to see the changes in how far I can go. It's encouraging!

I'm hopefully going to San Francisco January 7th so that'll restore my sanity a bit. I need it actually. Going there is like recharging my batteries. My doctors tell me I'm ok which gives me a little confidence boost and the city itself gives me piece of mind. I always end up crying while I'm there just because its filled with so many emotions for me. I like to sit somewhere by myself and just let it all out. San Francisco.....my release....

School:
I've been SO busy this week!! I've been doing my Career/Work Experience class stuff so I've been following around interpreters and it's been intense! Very cool though and I'm learning so much. I've got about 14 hours in so far. I need 48 :(

I'm getting better and more confident with signing so that's good! I'm so scared though still, scared of committing to this, scared I'm not as good as everyone else.....the list goes on. One thing I've been considering is moving. I have absolutely no money so I'd have to get a student loan but if I really want to do this sign language interpreting thing I need to go to a school that offers a bachelors and Phoenix College only offers an AA and a certification. Lame. I want to move far away. Get away from Phoenix, from the same old day to day routine. I want to be on my own for once since I've never had that chance. I got sick so young and my mom's been super protective. I just don't know how I'd be able to pull it off but I want it so bad....

Miscellaneous:
I'm getting the tattoo. I don't know exactly what I'm getting yet because I can't decide if I should get a small one to see what happens or just get the one that I wanted. I don't know. There's so much to think about but I'm going to get it December 2nd. That day has meaning for me and some of my friends and it'd be perfect.

I got a new TV for my room and its pretty sweet being able to watch stuff at night since my meds make me an insomniac. I've mostly been watching the History Channel and the Travel Channel since the Travel Channel has been playing some cool Halloween themed shows like the top creepies places in the world and stuff. And the History Channel is making me feel smart. I know a lot about random stuff now haha. Not to mention I can watch my DVDs (that I put in French subtitles to help with class) so that's awesome too.

Also, I don't know if he reads this but I want to give a shout out to Mason. He's my buddy and it's been so nice talking to him lately. Unfortunately he hasn't been feeling well and it going through tough times. I want to send him my love and wishes that he'll feel better soon. I miss you sweetie!

Anyway, I'll try to write more often so I don't throw everything at you all at once. My life is just really complicated with a lot of levels and aspects so bare with me! :) Thanks for reading....

i cannot deny that you were designed for my punishment

feeling: productive
listening to: "Smile, You've Won" by Lydia


I finished my first week of physical therapy and HOLY HELL do I hurt!! Scott has made me stretch muscles I didn't even know I had hahahaha. I seriously feel old though and don't tell me "You're too young...." I'm not. Thanks to Mason for this, he said, "We're young kids living in old bodies." That's so true. It's getting to the point that it's hard to sit at the computer anymore and even to lay in bed hurts sometimes. This isn't because of my physical therapy, it's because of all my meds taking their toll on me. It's over 3 and a half years since I had the transplant so it's bound to catch up to me sooner or later I guess. I just hate when my body doesn't function "normally."

I've felt so rebellious lately. I want another tattoo and although I've been told time and time again how bad it is I can't tame the urge. Some of you reading this (if anyone even actually read it) are thinking I'm being stupid. It's a tattoo.....who wants one anyway? I happen to love tattoos as a way of expressing myself. I got my Tinkerbell tattoo when i was 17 and don't ever regret it. It doesn't have as much meaning as some of the tattoos that I want today and I want to get out there and "redesign" my body. Getting tattooed is almost like getting a passport. Passports have a bunch of stamps tp represent places you've been and tattoos are like stamps to help you remeber certain points in your life. Its like a scrapbook for your skin haha. Besides, sometimes it takes pain like that to make you feel more alive. I've had a semi-major surgery since the transplant, a few little ones and a bunch of those dentist appointments that require the antibiotics. My question is, why can't I get a tattoo if I just took an antibiotic and made sure to keep it clean? Ugh.....

And I was going to say something else but my meds give me the memory of a goldfish. *pause for thought* Oh yeah!! I was going to say how much more confident I'm feeling about my French/American Sign Language. For those of you who don't know, I'm currently in school trying to be an interpreter for deaf people. The French is totally random but I absolutely love learning it and hope I'll some day be able to live in Montreal or something for a little while. This is one of the reasons I keep going. Being able to work really hard (like learning a language) and then having a huge goal (like living in Montreal) is what life is all about. After all, you gotta have goals- some fun, some serious because that's what'll keep you motivated from day to day.

let's get physical

Well, I guess I better start actually blogging now. I'm going to do it like I do in my journals so here it goes:

I'm feeling: calm
I'm listening to: "Gehenna" by Slipknot (I've been listening to this CD nonstop lately and this song in particular so you'll probably see me listening to it in the next blog too.... :P)

I went to my first day of physical therapy today and it went very well. First some background as to why I need it.... I apparently have peripheral neuropathy and the cause of it? No one knows. It could be the pills, it could be the fact that I was bed ridden for so long before the transplant or it could just be that my nervous system sucks in general. Either way I experience a sort of numbness all the time and it gets worse when I walk long distances.

The worst of this happened when I was a bridesmaid at my friend Meredith's wedding. Walking around in the heat in high heels and having numb legs is NOT a good combination. I just could not hold myself up anymore and after attempting to walk to take pictures and looking like I was drunk doing it, fell over simply because I couldn't support myself anymore. I just started bawling because it frustrates me when my body prevents me from doing things that seem so simple.

So, I've talked to doctors about it and many medications and tests later I'm still the same and getting worse. Physical therapy was once suggested but then also blown off as if it wouldn't help. I decided to go against all of my doctor's negative attitudes about it and try it. Why not, right? So today was my first day of actually working out. Last week I met the therapist, Scott and he said we would do 2 days of aquatic therapy and 1 in the gym every week. Today I was in the pool and I was so nervous!! First of all, no one is allowed to see me in a bathing suit, I'm so self-conscious of my body. But Scott, (who happens to be a total cutie) has scars too from an accident he was in. So, he actually does have a nice body and doesn't care about the scars so it helped me not to care either. Obstacle one complete. Obstacle two: I CAN'T WALK!! How am I supposed to sustain exercise? It actually wasn't bad. The pool actually gives you a good workout even while only doing simple activities so I felt like I got a lot accomplished.

We'll see how it goes but I feel really comfortable around Scott. I think he's really trying to help me and do what is in my best interests. I can't wait to see if I start feeling stronger or if I can go longer distances when I walk. My goal is to be able to go on a European cruise next summer and actually be able to do things like tours and stuff.

London. London. London. London. London. London..........

(London is my favorite city in the world by the way so being able to go again is my inspiration to make sure this therapy works. I gotta try, right?! Wish me luck.)

one last breath

I've been thinking about my friend Kristi a lot lately so I figured I'd copy my Myspace blog over here so you guys could learn a little about her....

I've sat in front of my computer screen for at least an hour thinking about what to write but I simply don't have the words. I got a letter in the mail today and I was excited because it was from Kansas, "it must be Kristi writing me back. And it's even thick....yay for pictures!!" As I open the letter I see a card from her mom. "Oh that's nice," I think. And then my eyes focus on the obituary in my right hand. Kristi's. I drop it on the table and run crying....WHY?!?! This can't be happening. Not to my Kristi.

I met Kristi in January of 2005. We were both wating for double lung transplants. I always felt like I had it a little better than her because she was forced to get exercise and walk up and down the halls with her trach tube. I got to sit on my ass. But every day she'd be walking back and forth and I'd wave admiring her strength and perserverance. We were the same blood type so technically, we were in a little competition to see who could get lungs first. I did but she followed shortly after and as I was waking up from mine, she was in getting hers.

Our surgeon, Dr.Charles Hoopes would give me updates on her since she was having a few problems and one time he told me to walk over to her room so I could show her how well I was doing and give her a little boost of confidence. I took the challenge even though I'd barely walked like 20 feet because Hoopes is VERY intimidating and also, I take on pretty much any dare. So I was gonna cheat and ride my wheelchair up to her room and then walk past her window. But nooooooo, I get to the end of the hallway and Hoopes is sitting there all omnious so I knew I had to walk because he would be evaluating me. I made it and I remember the pure joy on her face when she saw me. They made me go after awhile though, I think I was raising her heart rate (haha) but it was nice to see her regardless.

Kristi and I and Ila who later had a heart transplant were known as the three stooges because we all got along so well and supported each other during these crazy times. I remember seeing her walk around with a mask on (because we were at high risk for infection after transplant) and I was proud to know her and everything she'd been through. We'd done it together. And through these years we've stayed in touch through the phone, letters, and recently through myspace. We'd joke about how much the our medications suck or how we think Dr.Hays is hot and now, I'm all alone.

To me this is more than a death. A big part of me has died inside too. She was my equivalent in so many ways and it's like I see myself in her. I know I'm a ticking time bomb but I can usually try to put it out of my mind and deal with it. Losing Kristi is like losing hope. She was just like me, young and just wanting to have fun. She lived life to the fullest, for sure and at least I can say that she knew how to make the most of it all. How I can lose someone so strong like that is what tears me apart. I honestly don't have words to express exactly how I feel and most people won't even understand but if you're reading this, then please allow me sometime to reflect on this all. If I don't talk to people for awhile it's not your fault, I just need time to put all this together and tell myself that this is really happening. In the meantime, I hope all of you will think about this and are inspired to live like she did because you never know when your time might come. In her last blog on June 25th, 2008, Kristi wrote this:

Love yourself, make peace with who you are and where you are at this moment in time.
Listen to your heart. If you can't hear what it's saying in this noisy world, make time for yourself, enjoy your own company. Let your mind wander among the stars.
Take chances, make mistakes. Life can be messy and confusing at times, but it's also full of surprises. The next rock in your path may be a stepping stone.
BE happy when you don't have what you want, want what you have make do, that's a well kept secret of contentment.
There aren't any shortcuts to tomorrow; you have to make your own way. To know where you're going is only part of it. You need to know where you've been to. And if you ever get lost don't worry; the people you love will find you count on it.
Life isn't days and years, it's what you do with time and with all the goodness and grace that's inside you. MAKE A BEAUTIFUL LIFE....
The kind of life you deserve.

R.I.P. Kristi Daneen Medlen

February 15, 1978-July 18, 2008